Sometimes life is hard to swallow

When you eat and drink are you aware of what your body does?

I am. I have to be.

Can you eat and drink whilst watching TV or chatting to friends between mouthfuls?

I can’t. I have liquid dysphagia.

Dysphagia is perhaps the  main reason preventing the adequate nourishment of many people.  The dictionary defines dysphagia as difficulty or discomfort swallowing as the symptom of a disease or condition.

I live with a neurodegenerative condition called Friedreich’s Ataxia* (see footnote). I am 37 and need assistance in almost every aspect of my life. My dysphagia is just another part of me.

People affected by dysphagia do not just lose the enjoyment of eating.  They lose the ability to adequately nourish their bodies and risk causing other life threatening issues such as choking or chest infections caused by liquid entering the lungs instead of where it’s meant to go.

I have been a science student all my life.   I have GCSEs, a GNVQ, a Batchelors Degree, Diploma’s and many miscellaneous courses under my belt, all leaning towards the sciences. Wait!  Before you get tired of my bragging there is actually a reason why I am telling you this.

Throughout all of the lessons I’ve had, no matter how complicated the subject is there is an underlying principle governing the  basis of human survival.  No matter what gender, ethnicity or ability, there are three fundamental needs that must be fulfilled.

  1. Food
  2. Water
  3. Shelter

These are the needs that will govern any survival programme you will ever see because these are the very basic needs of every human on the planet.

Over years of evolution we as a species have learned how to turn these three base needs into enjoyable activities.

We no longer eat just to live; we cook fabulous food and make special dates to eat it such as celebrations and romance.

We no longer just drink water to live, we meet socially for drinks from coffee to wine.

We no longer just build shelter to protect us from the elements, we build elaborate homesteads that we lavishly fill with love and decoration.

So, what happens if we can no longer enjoy eating and drinking?

Our quality of life is diminished.

So, what happens if our ability to eat and drink is compromised?

Without adequate nourishment, we die.

For me this means I must ‘consciously’ sip and swallow my drink or it will go down the wrong pipe and end up in my lungs.  This compromises my ability to breathe and causes a mega coughing fit. Sometimes the coughing can take 10 to 20 minutes to dissipate, which is especially embarrassing in public places.   It draws attention to me for all the wrong reasons and I am sure it makes people think I have some sort of communicable disease!

People without  dysphagia can drink whatever they like, whenever they want, with barely the slightest thought as to chugging down their favourite tipple.

I, on the other hand, must consider many things.  Having lived with liquid dysphagia for many years,  most of the following is just part of my daily routine and it does get easier.

To be able to drink safely and effectively I must consider the following:

  • Do I need a drink?

The answer is usually yes but I must ensure that my stomach is not too full from the last time I ate or drank or else, unpleasantly it might all decide to reappear!

  • What drink shall I have?

To be honest I have lost track of whether my dysphagia is worse with hot or cold drinks, it’s both really.

  • What vessel do I need?

Because my grip strength is reduced, I need a mug or a cup with a handle.  I need to ensure that it is not too heavy for me to be able to lift safely and more and more often I need a straw and a lid as strength, coordination and coughing issues can lead to spillages.  Also, a straw helps me target liquid towards the back of my mouth which helps and having to ‘actively suck’ the liquid through the straw, helps me concentrate on the action of drinking.

It doesn’t just end there though with every sip of drink I must think about what I am doing and which muscles to activate during my swallow and ensure its success.

The people I spend time with now know not to react to my sudden and sometimes violent coughing fits.  I will breathe eventually I just need to clear my throat.  Unless of course I start going blue and then I’d like to think they’d step in and do something!

Emma Buckett, Admin Assistant, Dysphagia Matters  06/03/2017

*For more information about Friedreich’s Ataxia visit www.ataxia.org.uk .

* And for more about me see my blog: http://adventuresofpom.blogspot.co.uk/

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